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“100K” Marathon: A Decades-Long Health Study Makes Its Business Case

For the past several months, 108 people, most of them in the Seattle area, have been under constant biomedical surveillance. And they like it.

They’ve agreed to submit to a battery of medical tests that began this year but could stretch for 25 years or more in a landmark study organized by Seattle’s Institute for Systems Biology. These “pioneers”—the study’s name for this initial group—are the first wave in what ISB hopes will become 100,000 volunteers. Their personal health information will constantly expand a store of data that ISB researchers will mine for early signals that a person is shifting away from wellness and toward disease, perhaps leading to new ways to diagnose and treat disease—or prevent it altogether. That in turn could lead to a new wave of products and businesses; ISB itself is planning a related startup.

But all this talk of new insights, therapies and businesses means sorting out big questions. For example, who’s going to pay for the massive undertaking is by no means settled, and recruiting industry backers—something the nonprofit, privately funded ISB is open to—could change the nature of the study itself. What’s more, there’s no guarantee that the health information being collected now will be relevant in ten or twenty years as technology, and what it reveals about the human body, speeds ahead.

Nonetheless, the 100K Wellness Project is underway, and a few months in, it’s already begun to provide useful information to its first participants.

Lee Hood (Credit: Institute for Systems Biology)

The project is the brainchild of ISB president Lee Hood (left), himself a pioneer in many branches of biomedical research, including protein and DNA sequencing. It’s a way to put into practice what Hood for years has called “P4 medicine“—predictive, preventive, personalized and participatory—and also a way to pass down Hood’s lifetime of work to the next generation; the project is meant to span 25 years or more and could outlast Hood, who turns 76 this fall.

His co-primary investigator on the project is associate director Nathan Price (below), who is in charge of data analytics: building the data collection systems, layering all the information, and analyzing it to create what Price calls “actionable items”—health information that the participants can actually use. In other words, Price is the cloud guy. (He’s also an Alzheimer’s disease researcher.)

Nathan Price (Credit: Institute for Systems Biology)

The project will measure just about everything possible and create a personal health data cloud for each participant that would grow each day. Over time, the clouds would comprise a rich database that would be fed back to the participant, with help from wellness coaches, not after years of monitoring but as soon as the information is verified.

The project has already begun to provide health-related insights to its participants, including warnings of elevated heavy-metal levels, pre-diabetic conditions, and vitamin-D deficiency (and the latter not just confined to the participants in the gloomy Pacific Northwest).

Seven measurements are slated for each person: a one-time whole genome sequence; continuous monitoring of cardio activity and sleep patterns with a wrist device; a quarterly check on the gut microbiome, via a stool sample; proteins, tracked via blood sample, to check on the liver, heart, brain and lungs; a broader blood test three times a year for cholesterol levels and other commonly ordered samples; a panel of more than 1,000 metabolites (again, via the blood); and an epigenetic profile, which looks at snapshots of a set of chemical reactions that turn genes on and off without altering the underlying genetic code.

It is early days. I caught up with Price in June and again recently, just before as the pioneers’ genome sequences were due to arrive, to discuss the technological complexity, the project’s potential appeal to drug makers and insurers, and the kinds of businesses that the project might spawn—including one from ISB itself. What follows is an edited and condensed version of my two conversations with Price.

Xconomy: What does it cost to work up a single person in 2014, and how will that cost change in the next few years?

Nathan Price: Today it’s about $10,000 per person to do everything. We’re hoping for a Moore’s Law type of decline, though, so in five to eight years, maybe it gets down to $1,000 or $2,000. Perhaps down to a few hundred dollars in ten years.

X: How did you recruit the pioneers? Will it be hard to recruit larger groups?

NP: We started with friends of ISB to get out of the gate. For the most part, they’re people who know us and buy into our mission. As we expand to larger populations, they won’t … Next Page »